Saturday, October 11, 2014

Monday, September 15

I start my day worried about bone pain.

I walk over to the Miriam at eight to get an injection of pegfilgrastim, which will help my body produce more white blood cells. On the recommendation of Carolyn, one of the oncology nurses, I take some acetaminophen before I leave my house. This may help to prevent the bone pain.  Ugg.  That sounds so unpleasant.

Jen takes me in, takes my vitals, and gives me my shot.  Quick and easy.  She tells me where I am most likely to get pain, if I get it.  It seems to be centered around the big bones where white cells are made. This makes sense to me.  Also the sternum or anyplace I have had a broken bone.  I think they tell you about the sternum so you don't think you are having a heart attack.

I feel fuzzy brained as Steven and I walk home. By the time I get home, the feeling has worn off.

Sara and I take the kids to the playground today.  It is sunny and warm, not quite warm enough for no coats when we leave.  While we are there it warms up, and all coats are off.

We usually spend some time at the playground section, and then head over to the fountain to look for treasure and play around the fountain. We have a boat I have attached a string to, and we walk it around the edge.  It is fun for the kids, and they do a good job of waiting for their turn.  We have a problem keeping the boat from capsizing, but the kids will let us right it if they are bothered by it, or they pull it on its side.  One of the boys gets upset when the boat tips, and as I reach to fix it, he slides into the fountain.  I grab him before he is all the way in, and Sara and I get his clothes and shoes off and quickly wrap him in my sweater and coat.  He is upset, but cheers up quickly, especially when he gets carried all the way home.

At home we have lunch and naps. I take a nap while the kids are asleep.  I get up before Sara has to leave at three thirty to take my dad to the doctor.

I get a call from Sara around four, and she is crying hysterically.  My father was in her car, and they were leaving the nursing home for his doctor's appointment.  He leaned back and his eyes rolled up into his head.  She stopped her car and ran into the nursing home for help.  They got a crash cart and started working on him in the driveway while they waited for the rescue to arrive.

Sara was upset they wouldn't let her go in the rescue, so a police officer gave her a ride to RI Hospital.

My father was unresponsive, and though they worked on him all the way to the hospital, they weren't able to restart his heart.

I felt badly my sister was in such distress and that I couldn't get to her right away.  Kaileigh was here, but out for a walk.  Ayla came right over, and by the time she arrived, Kaileigh had returned.  The three of us went to the hospital together.  Steve took care of the last child for me, and then took the bus over to meet us.

The emergency room staff took us to find Sara right away.  She was sitting alone in a family room, with a box of tissues on her lap.  She told us that our dad, Grampy to my girls, had died.  It was the most helpless feeling in the world to see someone you love so distraught, sobbing uncontrollably.  I was upset that my father had passed on, but more upset by the anguish and quilt my sister was feeling.  She thought she had killed him somehow, waking him up to take him to his doctor appointment.

My sister, who had taken my father in after he had been living with me and I needed to give my middle school aged son his room back.  She let my father live with her, and increasingly became more responsible for his care as his health declined.  She helped him keep track of his appointments, his medications and getting him to dialysis when he needed help.  She brought him to the emergency room more than once into the wee hours of the morning.  She was so devoted to taking good care of him. Sara had cleaned his clothes for him, let him take over her living room when he could no longer climb the stairs, and made sure he ate. She was an incredible and loving care giver to him, and now she felt like she had let him down somehow,

I volunteered to call his sister, Anne Marie, to let her know what had happened.  This is one of those things you cannot realize how difficult it is going to be until the person you are calling has picked up the phone.  She didn't sound like herself to me, so I asked her a couple of times if it was really her.  Then I had to tell her the sad news.  It was heartbreaking to hear her cry on the other end of the line.  I don't know what she had been doing before hand.  I don't know who was with her to give her a hug or help her deal with the news I had just delivered.  It was one of the hardest things I have ever had to do.

She would call her brother Dana, to let him know, and come to the hospital to say goodbye.

My Dad was Catholic, so Sara had the staff call in a priest to issue last rights.  Kaileigh, Ayla, Sara and I all went to see them administered and to say goodbye.  It was surreal to see my father laying there motionless on the gurney.  He was still intubated from the resuscitaion attempt, they couldn't remove the tubing until the medical examiner arrived.  His arms were bruised from all the medical procedures he had gone through in the past few weeks.  It was hard to think of his repose as peaceful with that ridged tubing coming out of his mouth.

We watched as the priest rubbed him with oil and said Hail Mary over him.  We stood there motionless and silent, watching, waiting, not knowing what to do.  When it was all over, we each took a turn saying our goodbyes in our own individual way.  I touched his hands, still warm, but cooling, rubbed my nose against his, touched my forehead with his, gently kissing it before turning away.  He still smells like my dad, just cooler and waxy. I hug my daughters after they say their good byes, and my sister, before we leave his bedside.

Shortly after we return to the family room, we start to talk about where the wake should be. My brother Tim, Steven and Chauncey arrive followed by Dana and his wife Terry, and Anne Marie and her husband Rick.   We hug and say how sorry we are for each other.  We lost our father, they lost their older brother.

Tim and I go with them to say goodbye to their brother.  Anne Marie is sobbing so hard, but trying to be strong.  I give her a big hug.  It is sad to see them looking and touching and saying goodbye.  I was worried that I had done the wrong thing, told them the wrong way, made it harder for them by calling them here, but somehow it seemed like the only thing to do.  How do you prepare for this?  How do you know what to do, who to call and when?  It is all such a a surprise when it happens, even though we all know that eventually, it will.

We go over what we need to do next.  Call my brother in Michigan, my sister in Ohio. 
Although my father lived in East Providence for most of his life, his friends and most of his family are in Cumberland where he grew up. We decide the wake should be held in his hometown.  His brother will call the funeral home, and he thinks he can get a bagpiper, something my dad always said he wanted at his funeral.

These things decided, we move on to other things.

We leave the hospital, nothing to sign, we can just go. In a world filled with so much paperwork it is a little unsettling, like it is not official.  It feels strange to just leave, and then things will just happen because we said this is what we wanted.

We need to get Alex, from Whole Foods.  His shift is just ending, and he doesn't know yet.

Sara's car is still at the Nursing home, so Steve, Alex and I go to get it, and pick up my dad's things.  We are looking for his phone, the one that Sara picked up for him on Saturday, because he couldn't get his old one to work.  It was not in his shredded clothing at the hospital, and we don't know where it is.

When I get to the nursing home, I get Sara's keys from the receptionist.  She tells me she is sorry and that they did all they could.  I thank her and ask her if it is okay to get my dads stuff.  She tells me to go on up and get it.  I ask if I need to do anything else, she tells me no.  They can take care of any lose ends through the mail.

It feels weird to just take my dads stuff from the room without telling anyone, so I go to the nurses station to tell them what I am doing.  I realize this is more for me than them, they seem clueless about what had happened.  One of the nurses starts looking around in a back room for his belongings until I explain that this has all just happened this afternoon, and that his things are still in his room.

We don't have a bag, so we pile the few things he has there, some clothes, his candy, odds and ends.  No phone.

We go outside and look around the driveway for it, thinking it may have dropped in the grass when they were working on him, but not knowing exactly where they were.  Alex calls over from the car.  He called the number, and can hear it ringing in the car.  We unlock it and find it in the console.  Dad must have put it there when he got into the car.

As I sit down to get the phone, I can smell my dad in the car.  This is going to be hard for my sister, I think.  The scent is so strong, and so fresh.

By the time we make it back to my house, everyone is so hungry.  Ayoko had brought over some chili earlier in the day, Kaileigh brought some saag panier when she came over and it turns out to be like the miracle of the fishes.  The food we have manages to feed seven hungry people. It is delicious and warming.  There are even cupcakes Ayla had brought over for my birthday. we are all well fed.

Before we finish dinner, the organ donor people call.  It is so strange, we wonder what they would use?  Did they know my father's history?  No kidneys, his lungs, liver and heart weren't in good shape, he was blind in one eye.  Sara asks if they can call tomorrow.


  1. So sorry, Kathy, that is such a painful loss.

  2. That is a tough story Kathy. I didn't know he had died so completely unexpectedly. I am sorry for your loss. Sara has a place in heaven. I hope someday someone is as kind and generous to her if she needs help.

  3. So sad for Sara that she was on her own with him when he died. Your dad was so lucky to have lived all the way to the end of his life in the loving homes and care of his daughters.

  4. Oh, Kathy....such a heartbreaking loss. Your family has an amazing legacy of love and caregiving-- and in the end, I think little matters other than the love we have given and received. By this measure, your father was one of the most fortunate to have been so lovingly cared for by you and Sara. As are all of our children who claim you and Sara as their own. We love you so and can't wait to see you again soon. Sending a heart full of love to you...